On their own track....Childhood development

This weekend we had the privilege of caring for our granddaughter while her parents had some time to themselves.  We all had a great time playing, cuddling and interacting with her on her visit.  Her many Aunts and Uncles from our family are always excited to play with her when she visits.  Her 2 year old uncle is always extremely attentive to her every need when she is around and you can just see that when she is a bit more mobile the 2 of them will be into so much mischief together.

Our granddaughter is 8 months old and appears to be developing on track.  Raising many children with intellectual and developmental disabilities it is important to be around children that are developing typically.  Each child should progress according to their own abilities, and each step is a cause for celebration however it is helpful knowing which ability is delayed and which ones typically happen next.  Knowing and refreshing yourself with typical milestones is beneficial so when you speak with medical professionals and therapists you can gain support for your child.  Sometimes, not with my granddaughter because she is "perfect" but with "other" peoples kids you will see typical developmental behaviours that make you happy that your child hasn't yet met that milestone.  You know the ones - whining, tantrums, defiance, teenage aghast, etc.

It is important to identify developmental delays early so that treatment can minimize the effects of the problem.  In our family with many children with significant delays our 2 year old appears miles ahead of his siblings however when with other peers you can see he also has fairly significant delays.  If we did not keep current with what is typical development this could have been easily over looked.

Learning the stages of childhood development helps you respond to your child better and you can arrange your child's environment in a way to promote further development.  For some of our children we have had to "baby proof" their environment but this had to be more extreme because of their age and size.  A 18 year old functioning as a 2 year old still needs a safe environment however they can get into a whole lot more than a 2 year old that is only 2 1/2 feet tall.

It is helpful knowing where your child's development is in comparison to their age so that you are gently pushing for more but not expecting way more than they are capable of.  A 19 year old typically is capable of being left home alone but if that 19 year old is functioning at a 6 year old level you wouldn't leave them home alone.

Every child is different and will develop at their own pace however it is important that they do pass through the various stages.  Keep informed what is typical, where your child is functioning and how to encourage further development.  Don't forget to seek help from medical professionals and therapists.

Working myself out of a job

It seems today that so many children are raised with their parents doing everything for them.  When my children arrived at college they were shocked to learn that their roommates do not know how to cook a meal, wash their clothing, make an appointment, etc.  Some of their friends even had their parents doing their college assignments for them.  I feel as parents,  it is our job to teach children these skills and many more.  When parenting any child I feel we are doing them a disservice if we don't start teaching them these skills as early as possible.  With children with special needs it may take a very very long time for these skills to be mastered so we need time on our side, so start early.  The more that a child is able to do the less you have to do for them as an adult.  This may be the difference for an individual with special needs being fully dependent to semi independent.

Start teaching life skills, as early as possible, as it takes longer for individuals with special needs to master skills.  Young children have a desire to do what the adults in their lives are doing so take advantage of that. In our family we do not "hold" the children back if they haven't mastered one skill but want to try another. If the skill they are wanting to try is to difficult then we break it down to smaller parts. For example we have a few that are not able to dress themselves however they are able to sort their dirty laundry.  Some aren't able to bath themselves but do wash "some" dishes. By attempting these different life skills the child is building new strengths that will hopefully help in mastering the deficits in their other skills.  I feel learning these skills are like "practical" therapy that will bring our children further in life.

 We have laundry baskets for dark and light colored clothing just outside of the bedrooms and have the children put their dirty clothing in the baskets.  Our 2 year old is able to put his clothing in the basket, he doesn't sort but has mastered putting his dirty clothing in the basket (and then pulling it out and doing it over and over because it is fun to him).  Building his coordination and strength. As the children get older they are able to sort their laundry between dark and light. Color recognition  When they show an interest (want to help) in using the washing machines and dryers we encourage that.  Have them put the clothing in or take it out.Gross motor/heavy work.  Show them how to turn the machine on.  We have a chart on our machine with step by step directions how to turn on the machine.  We have put color coded stickers on the machine so they can independently turn on the machine.  following directions, color matching, fine motor skills.  

When it comes to washing dishes we fill up 2 sinks and only work on dishes that are safe for them to handle.  They will wash the dishes and then pass them to us to "rinse/re wash".  While working on this we are labeling items and chatting.  fine motor skills, speech, sensory.  Putting cutlery away is similar in concept to a shape sorter which works great and is practical for an older child.  At meal times we teach them how to set the table and encourage them to clear their own dishes.  We have a picture of a place setting that the children will take from spot to spot at the table and then lay out the cutlery.  fine motor, matching

As with all activities, you need to ensure what you are having your child do, is safe for their abilities but encourage your child to help and learn new skills.   Spend the time now "working yourself out a job"  it will be more work for you teaching them but in the long run your child will be better off.

All that matters is "they had fun"

The weather has been scorching hot here and in a quest to keep cool we headed off to the lake.  At our local park there are mini private beaches all along the shore line which is the perfect solution for us.  It probably took us longer to get ready to go, than we were actually able to stay, before the screaming melt downs started. We arrived at the beach and loaded the babies into the stroller, grabbed our towels, swimsuits, lifejackets and cooler packed with our lunch so we can find our "private beach".

As soon as we arrive at the beach we all eat our lunch which is not your typical picnic as we have many dietary needs. One child is on a Ketogenic diet for seizure control that must also be pureed due to swallowing issues and the "babies" (2 and 4 years old) require pureed food also.  Then there are the other 3 kids with swallowing challenges that are at a "soft chewable" level of eating plus a few of us that can eat a typical meal.  While enjoying our lunch I make a point of taking a couple pictures while everyone is happy.  After lunch the plan is to play in the water so everyone needs to change into swim wear.  The 10 year old is able to put on her own swimsuit with a few directions and the teens already had their swimsuits on.  Time to change the more dependent children - how is it possible that all 6 in diapers have soiled themselves in the 30 minutes since leaving the vehicle.  Diapers changed, swimsuits on and then their sensory issues make it that they do not want to go in the water.  The 4 year old starts screaming and throwing things for no apparent reason.  The 6 year old wearing his swim shorts without a diaper pees himself and starts screaming that he is wet (and doesn't understand how he got wet).  The 8 year old has a seizure, even with the diet and medication, (the extreme heat brings on seizures for her) that scares her and she starts crying.  3 are crying so 2 more quickly join in because they feel that's the thing to do.  Time for this beach excursion to end, we pack up quickly and get home before all heck breaks loose.

  Dad gets home from work 1 hour later and the kids excitedly tell him how much fun they had at the beach.  It is amazing their perspective on the day, it makes the effort worthwhile.  They don't remember the peed pants, the not wanting to go into the water, the seizures, the crying or the fact we were there less than a hour.  They remember going to the lake and it was fun.  Fortunately the pictures also show we were at the beach and everyone was happy.

Surviving Fireworks with Sensory Processing Disorder

Happy Birthday Canada! Today is our country's birthday and we make a big deal of teaching the kids about their country.  For the last couple days we have been doing crafts related to the Canadian theme, learning about Canadian symbols, singing our National anthem, reading books about our Provinces and doing puzzles of Canadian maps.  We have also been preparing for the Canada Day Celebrations which includes fireworks.  Fireworks send terror through many of our children who suffer from Sensory Processing Disorder.

6 tips for Surviving Fireworks with Sensory Processing Disorder 

Prepare your child ahead of time.  Explain in detail what will be happening, how it will look and sound.  Show your child pictures and/or videos of firework displays - YouTube has lots to choose from.

Bring Ear Protection.  As the loud screeches and bangs frequently set off those with sensory issues provide them with good quality ear protection to decrease the intensity of the sound.

Bring a comfort item, weighted blanket or fidget toy.  If a weighted blanket is beneficial to your child bring it so they can curl up under the blanket while watching the fireworks.  If your child prefers, have them sit on your knee and apply deep pressure (bear hugs, massage, etc) as this can be comforting.  Also a fidget toy may help distract your child from the intensity of the noise, making watching the fireworks more enjoyable.

Watch from a secluded spot.  Quite often the crowds are a trigger for sensory challenged individuals, this trigger can be reduced by finding a secluded spot.  The other benefit of watching from a different location is that if your child struggles you won't be distracting the other viewers.  We scope out a location ahead of time so our children don't even realize that we are at a "different" location.  By watching from a different location we also have the option of watching from our vehicle which can be comforting for some children.

Snacks.  When all else fails and it looks like your child is nearing the end of their patience give them a snack.  Chewing or sucking on food can be calming and is a great distraction.  A snack may just buy you enough time to see the whole firework display.

Be positive!!! Your view will feed your child's behaviour, so be positive even when you think your child is out of ear shot.  Encourage your child and praise them for their effort.

Who's on your team?

Complex children require the support of many professionals and as a parent it can seem like you are working on a never ending puzzle trying to figure out who does what and whom would be best to support the needs of your child.

For our family we started with our family doctor when building our team as he referred us to a pediatrician.  This pediatrician was a great doctor and worked okay at first but with constant issues with her staff not passing on messages or allowing appointments we soon determined this relationship wasn't in our children's best issue.  When looking for a replacement pediatrician we asked around in our community and with peers parenting children with similar challenges.  Having a pediatrician with excellent office staff makes it so much easier when trying to meet your child's needs.

Once set up with a pediatrician we were referred to other medical specialists depending on the nature of our child's conditions.  One thing that we have found very helpful is building a "team approach" with the medical professionals.  We ensure that all the medical doctors know who the children are seeing, what testing is being done and any findings they have regarding the child.  We also ask the medical specialist to copy one another on any letters, reports or testing.  Having the doctors working together is a tremendous support especially for complex children that they are still trying to completely diagnosis.

Therapist support is another challenge, when the children are young, if they have delays, early intervention will follow them.  Where we live this includes infant development (until 3 years), speech therapy, occupational therapy and physical therapy.  As the children get older (school age) the therapy can be provided by the province, school system or privately.  Parents quite often have to advocate strongly to get these supports for their child and search out methods to pay for these supports.

There are also other therapies available for example hippo (horse therapy), music therapy, aqua therapy, chiropractic therapy, massage therapy, vision therapy, applied behavioural analysis therapy, behavioural therapy, etc.  We discuss with our medical team the various forms of therapy we have each child participating in and what is being worked on.  We also provide copies of reports from the therapists to the medical team.  By providing the therapists findings this gives the medical doctors another view of the challenges your child is presenting which can aid in supporting your child.

To determine what may benefit your child you should have a discussion with your medical team.  Research what is available and the benefits of the various therapies.  Talk to the professionals offering the various therapies and see if what they offer meets your child's needs and your goals.  As the parent it is our job to support our child in the best way we can.  This may mean seeking support from various professionals to help along the way.

Should we really open up for Openness

I have been busy collecting photos and writing updates/letters about 7 of our children.  We have an openness agreement with their birth parents which we are required to spend photos and updates twice per year.  Our updates are sent to a third party and then forwarded to the birth parents as we were advised not to share our personal information with them.  Within the agreement the birth parents are also expected to send letters to the children which are shared at our discretion with the children, assuming the content is appropriate.  Unfortunately the birth parents have not fulfilled their obligation but this does not stop us from keeping up with our part.

We have a range of openness agreements with foster and birth families related to the children we have adopted.  Some, like the one I have been currently been working on, is very limited and non disclosing.  This type is ideal if there is a protection or boundary issue with the parties involved.  It is also beneficial in a situation where emotions are very high and the other party doesn't know if they can participate in an openness agreement.  This type of agreement doesn't have the pressure involved of having to meet face to face but it can be a great starting point that can expand if both parties are in agreement.

With other family members we have scheduled visits 2 times per year in a public location.  For these types of visits with young children we try and pick a location with a play area so the children have a place to burn off steam.  We also find it helpful to have a second support person at the visit.  This second person can be a sibling, friend or another adult.  This is beneficial when you don't want the child to be in a situation where they are one on one with the family member.  If they need to go to the bathroom for example they can go with the second person, this also gives us time to speak privately if needed with the family member.  In our family having multiple children that have been adopted it has been helpful for them to participate in their siblings openness visits.  The children are given the choice of inviting one sibling to the visit with them, the invited sibling is support to the child.  The invited sibling is able to gain a better understanding of what life was like for their sibling and this encourages communication about their past.  This also helps the children feel these visits are a normal part of life "not just for the adopted child".

With other family members we have completely open relationships where we invite them to our home or go to their homes.  With these family members they have adopted our whole family and we have adopted their whole family.  These relationships are like any other relationship our family has.

Some of our openness agreements are written "good will" contracts and others are verbal agreements.  We feel it is important for our kids to have an ongoing connection with their past.  For some of our children the connection with the birth family is very limited and the connection with the foster parents is stronger.  For some of the children the connection is with grandparents, aunts or uncles and others it's with birth parents.  Some relationships have developed over the years and others have waned but the kids have these connections that they can choose to continue when the become adults.  When you adopt there is a huge emphasis that you are the forever family and I agree that when you commit to adopt that it is forever but all the people that  have been in your child's life are also there forever and it is important to support that in a positive fashion.

The day...week the plague hit

We have been attacked by the plague.  The flu is bad for everyone but if you have a large family with multiple people getting sick it is overwhelming and if your children have special needs it's even worse - if you are a large family with multiple special needs it's like you have been hit by a plague.

The last week around here has been non stop vomiting, diarrhea and fevers with 8 children sick at one time.  5 of the 8 children also have significant special needs which most people don't realize the severity when the flu is included in the mix.  For the 5 the flu triggered multiple seizures and when vomiting we had the increased risk of choking/aspiration as they all have swallowing disorders also.  The flu for a person with significant special needs also tends to hang on longer for them than your average person.

After recovering from the flu virus the children need to recover from the secondary effects of the flu.  The multiple seizures effect the children's abilities, for example the children with feeding and swallowing challenges have regressed in their abilities and are back to only being able to eat pureed foods.  Their motor skills have regressed including their speech abilities. The ones that aspirated  have pneumonia to recover from, it's a never ending cycle.

I encourage everyone to help prevent the spread of the flu 

*If you have the flu stay home while sick and 24 additional hours after you have been symptom free (without medication).

*Limit your contact with people so you aren't spreading your germs.

*Try to avoid close contact with sick people.

*Wash your hands with soap and water multiple times throughout the day - after using the toilet, whenever you wipe your nose, before preparing food, before eating, etc.

*When coughing or sneezing cover your mouth with a tissue or the inside of your arm.

*Avoid touching your eyes, nose or mouth.  Germs are often spread when a person touches something that is contaminated then touches their eyes, nose or mouth.