Spectrum Warriors: Life Through The Autism Spectrum

It Takes a Village to Raise a Special Needs Child – Guest Post by Jessica Bunn-Kewley

Today my friend Jessica from A Puzzling Life has graced us with her words. I owe it to her for a lot of what I was able to do with the Monkey in the beginning. Not only is she a fellow autism momma but she is also a military wife as am I. She understood what I was going through the way that no one else ever could and for that I will always be grateful to her. I am always in awe of her strength and the way she has managed to almost always have a smile on her face no matter what is thrown her way. For that I wanted to share her beauty here with you. We hope you enjoy. – Sabrina.

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While going through some of my earlier blog posts I came across this little gem (it is attached at the end of this post) it was written about 10 months after our oldest was diagnosed, and as I re-read it I found myself shaking my head in agreement, because the one thing that holds true no matter what when raising a child (or multiple children) on the spectrum you absolutely must have a great team behind you. So 5 years into our autism journey, 2 diagnosis down with a third on its way and 5000 plus hours of therapy, I can honestly say it takes a village to raise a child on the spectrum.

We as mothers want to be able to do it all, we need to realize that it is not a bad thing to ask for help and in the case of our special needs children it is an absolute must, because it is hard to raise a child on the spectrum it is long hours and sleepless nights, It is a test of patience, you cant just go to the local play groups and ask for others opinions or call up your mom or best friends and say what do I do? It requires skills and training that can not be found in a parenting book or on line, we are not trained to know everything about raising a special needs child because no matter how much research you do you are not an expert, an expert on your child yes, an expert in any of the fields of therapy no way there are just too many of them.

There is more to therapy then meets the eye and this is where a great team comes into play, you must have a team of therapists and workers to help you in your journey through the very chaotic world of autism. So making sure that you have the right team is very important, if you are butting heads with someone or really don’t like what is being done or are not comfortable with communicating with your team then you need to reevaluate your team and maybe replace some team members. I have over the years had not so nice words with workers sent to my house and on one occasion actually threw a worker out of my house and others I have simply said your style does not match my own not that they are bad people or bad at their jobs but we need to be able to work well together. I am lucky that I currently have a really great team working with my kids. We have great therapists, and doctors, teachers and E.A’s.

Having a good working relationship with your child’s therapist is crucial to the development of your child. You need to be able to communicate your concerns and talk openly about the day to day challenges and successes. You need to be able to change things on the go and realize that sometimes you may not be able to see the end results so you need to trust in the fact that your therapist really does know what they are doing, Bringing a worker or in our case lots and lots of workers into your home and into your lives can be hard. It can be hard to trust someone that will be working so closely with your little one, and it can be hard to not want to take over, sometimes you need to take a step back in order to be able to allow the workers to form that bond with your child that is needed for success and yes this can be challenging at times especially when your child is in meltdown and you know you could fix it or they are stimming and you could easily redirect them. In order for your team to be able to best work with your child you need to trust in your team and realize that there is going to be a learning curve that not all days are going to go smoothly and that it is going to get worse before it gets better. The people that work with your child care.  They want to see success and they like it when their is parent involvement (or so they tell me ) because it does take a team to raise a special needs child, and they know that no matter how much they work with your child if you are not on board it is not going to work, it needs to be consistent across the board in order to see results.

We do not only need a great team of therapists but we also need a great team of support. A great support network can be a life saver during those days when nothing is going right, it may be as simple as the girl friends you call on the phone to vent to or a family member or friend that you know you can count on to come over and help out. You also need a go to grizzly bear, the one momma bear you can call for advice no matter how small and that you know will not only give you great advice but have your back no matter what. Another great support is social media, the one thing about social media is it allows special needs parents to connect with others that are going through the same thing and has helped to create a wonderful network of supports on line. Sometimes it is the local autism group where everyone just gets it, there is no judgement and at one point or another we have probably all been there. Leaving a special needs child is much more complicated then leaving other children, you need to think of so much more before heading out the door and it can be a little overwhelming and emotionally stressful at first but respite care is so important to families of special needs, we need to take care of us so we can better take care of our children and we can’t relax if we can not trust the person that is at home with our child so again you need a good working relationship with that person especially in our case where family members are to far away to help out.

Finding a great team of therapists, doctors, and workers, as well as an amazing support system can make a world of difference in the lives of families with special needs children. So do not feel bad asking for help, stop beating yourself up inside because you can’t do it all and embrace the fact that it truly does take a village to raise a child, and take comfort in the fact that around the world so many cultures still know the importance of having a large support network and family to raise our worlds children.

That’s me for today living life one puzzle piece at a time and utilizing my support network tonight to get out on a much needed date with my handsome hubby.

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And as you can see from my post below my views on this have not changed over the last few years.

MONDAY, JANUARY 18, 2010 A great team! Some say it takes a village to raise a child, in the case of my son it takes a team, an incredible team of wonderful specialists, doctor’s and therapist’s. The many people that are involved in helping with Grayden have made it possible for both my husband and I to cope with his diagnosis but have also enabled us to provide Gray with the best possible care and support available to him with the help of these fine ladies Grayden has managed to come a long way in a very short period of time, his speech is starting to come along and every few days or so he is saying a new word. We are very slowly working on sensory issues and finding different coping mechanisms that work for him. I have been told a couple of times that Gray is doing so well because of all of the care and attention that I provide for him and that he is a lucky little boy to have me for his mother. I am not going to deny this, I work very hard to ensure that I am the best possible mother to both of my children and to make sure that they are growing up in a house hold that is filled with love, respect and security. I believe that a happy child that is allowed the freedom to explore many new things and learn at their own pace while being raised in a supportive home can achieve anything. I feel this way for both of my children and though I am not denying the fact that Gray’s life will be much harder for him then it will be for my other children I do believe with all of my heart that he can and will do anything that he puts his mind to and what an extraordinary mind he has. I know that he is different with me then with other people I am his comfort zone and a safe haven when the world seems scary and overwhelming to this little boy I am his constant. This both thrills me and terrifies me at the same time, I want nothing more for my son then to feel safe and secure but realize that unfortunately as he grows older I will not be able to be by his side at all times and that very soon he is going to have to go out into the world on his own and that the world is going to seem very overwhelming to him and very, very scary. I know now that as much as I would like to be everything to him I can not he needs a team to help him along the way and as much as he needs a team I too need a team of people that I can turn to for support and I am grateful for the wonderful family and friends that I have to help me along the way.

“Lead me, guide me, walk beside me”

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